Family battles Sunnybrook hospital over comatose man’s right to live

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It’s what the 73-year-old Catholic man repeatedly told his family he wanted after he was diagnosed with a rare disease called progressive supranuclear palsy two years ago.

It’s what his wife and son have demanded on his behalf from his physicians at Sunnybrook Health Sciences Centre where he lies today, motionless and speechless.

It’s a position those physicians now challenge.

On May 14, they placed a note in Rodrigues’s medical chart saying he has “no reasonable hope of recovery or improvement” and that they have decided to withhold mechanical ventilation in the event of a medical emergency requiring life-saving treatment.

That change in status was made unilaterally, without the consent of his family.

And that dispute has triggered the latest in a series of life-and-death conflicts between Sunnybrook physicians and patients.

An ongoing Star investigation into end-of-life care in Canada has documented five previous disputes at Sunnybrook — one of them currently before the Supreme Court of Canada — placing the hospital at the centre of a growing debate that has confounded the medical and legal communities, patients and their families.

Rodrigues was diagnosed with progressive supranuclear palsy in the spring of 2010, his son and substitute decision-maker, Roger Rodrigues, told a three-member panel of the Consent and Capacity Board, a provincial body that mediates and issues rulings on end-of-life disputes.

“His reaction was, ‘Don’t let me die. Stop it from progressing. . . . If that doesn’t work, don’t let them kill me,’ ” Roger, who describes his father as his best friend, told the hearing. “He asked me to take care of him.”

Progressive supranuclear palsy, sometimes misdiagnosed as Parkinson’s disease, is a rare and progressive neurodegenerative disease involving motor and cognitive deterioration. It has no known treatment.

The senior Rodrigues told his son and wife that he would rather suffer and remain in the company of his family than surrender to an unwanted death, Roger testified.

Last July, Rodrigues was admitted to Sunnybrook and moved into the ICU in August.

Since then, he’s had to be placed on medical ventilation three times, Dr. Andre Amaral testified.

There won’t be a fourth, he and his colleagues have decided.

“He has no chances of recovery,” Amaral told the panel. “There’s no clear benefit in prolonging life when you cannot tell whether the life that’s being prolonged is actually worth living for. . . . We’re prolonging life for suffering and pain.”

Dr. Keith Rose, Sunnybrook’s chief medical executive, said the number of high-profile physician/patient conflicts at his hospital reflects the sheer volume of critical care cases it receives as one of Canada’s largest trauma centres.

“Nobody goes out to try and make families angry, to create confrontation,” he said, adding that the hospital administration supports the decision of its doctors in the Rodrigues case. “The final decision-making, after all steps have been gone through and discussions with the family, then, if it’s in the best interest of the patient, it is the physicians’ decision to make.”

The question of who ultimately has the right to decide the fate of a life in peril could gain more clarity with an impending decision from the Supreme Court on the case of Hasan Rasouli, another Sunnybrook patient whose family has fought for aggressive care against the wishes of doctors.

The court heard Rasouli’s case in December. A decision is expected in the coming months.